Evidence map›Paper›PMID 39797610›Full record

ArticleInternal medicine journal2025

Proposal and exploration of a novel score to quantify patient-perceived burden of inflammatory bowel disease under routine care.

Joseph L Pipicella, Bonita Gu, Jack McNamara, William Wilson, Lyle J Palmer, Susan J Connor, Jane M Andrews

Abstract readMulticenter Study
In one paragraph

Article in Internal medicine journal, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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0citing papers in PubMed
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1 · What the graph read from it

What it found

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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

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3 · Its place in the literature

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4 · The record

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5 · Who and what money

Authors and funding

7 authors.

Joseph L PipicellaCrohn's Colitis Cure, Sydney, New South Wales, Australia.ORCID 0000-0002-1796-918X
Bonita GuMedicine & Health (South Western Sydney Clinical School), University of New South Wales, Sydney, New South Wales, Australia.
Jack McNamaraGastroenterology, Hepatology and Inflammatory Bowel Disease Research Group, Ingham Institute for Applied Medical Research, Liverpool, New South Wales, Australia.
William WilsonDepartment of Surgical Specialties and Anesthesia, Lyell McEwin Hospital, Adelaide, South Australia, Australia.
Lyle J PalmerSchool of Public Health, University of Adelaide, Adelaide, South Australia, Australia.
Susan J ConnorCrohn's Colitis Cure, Sydney, New South Wales, Australia.
Jane M AndrewsCrohn's Colitis Cure, Sydney, New South Wales, Australia.

Funding

Janssen-Cilag Pty Ltd PCSIMM004696
6 · The paper itself

Abstract

backgroundThe burden of inflammatory bowel disease (IBD) is often reported on from a system or cost viewpoint. We created and explored a novel patient-perceived burden of disease (PPBoD) score in a large Australasian cohort.

aimTo create and explore a novel patient-perceived burden of disease (PPBoD) score in a large Australasian cohort, and correlate PPBoD scores with demographics, disease and treatment factors.

methodsThe Crohn Colitis Care Registry was interrogated in October 2023. Data from adults with IBD with an outpatient care encounter in the last 14 months among 17 centres were included. A novel PPBoD score was designed for ulcerative colitis (UC), Crohn disease (CD) and IBD-unclassified (IBDU). Correlations between PPBoD scores and demographics, disease and treatment factors were examined.

resultsOf those with adequate data, 46.7% (2653/5685) had no PPBoD, 34.6% (1969/5685) had mild, 11.3% (641/5685) had moderate and 7.4% (422/5685) had significant PPBoD. New Zealanders were more likely to have higher PPBoD compared to Australians (P = 0.047). Greater PPBoD was seen in patients with CD and IBDU compared to patients with UC (P < 0.001) and females were more likely to have significant PPBoD (8.7%) than males (6.1%) (P < 0.001). People with no or mild PPBoD were more likely to be on advanced therapies (55.7% and 59.5% respectively) than those with significant PPBoD (46.3%) (P < 0.001). The proportion of people on advanced therapies in Australia was higher than in New Zealand (61.2% vs 38.5% respectively, P < 0.001). Steroid usage was significantly higher in people with greater PPBoD (significant BoD 7.1% vs no BoD 1.1%; P < 0.001).

conclusionMost of this real-world care cohort had no or mild PPBoD. Data suggest that higher PPBoD levels may be resolved by appropriate therapeutic escalations.

Indexed as

Cost of IllnessInflammatory Bowel DiseasesAdultAgedAustraliaCohort StudiesColitis, UlcerativeCrohn DiseaseFemaleHumansMaleMiddle AgedNew ZealandRegistriesSeverity of Illness IndexYoung Adultinflammatory bowel diseasespatient outcome assessmentquality of liferegistries

Identifiers

PMID39797610
PMCPMC11981025

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LicenceCC BY-NC-ND
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.